My #pregnant partner had issues with #whitecoathypertension that caused us a lot of stress because the #OBGYN wanted to induce early based on bad #bloodpressure data. If you are in this situation, I wanted you to have some research that I conducted: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7720658/figure/F3/

[Post incomplete due to word count. See link: https://bookish-and-speculative.blogspot.com/2023/07/pregnant-blood-pressure-taken.html?m=1 ]

I hope you can use this to #advocate for yourself.

#ACOG, #BirthPerson, #Hypertension, #PatientAdvocacy, #Preeclampsia, #HealthAtEverySize

The paper shouts out #PatientAdvocacy groups and my preferred term, #LongHauler !

I have pretty much no memory of anytime between when I first caught #COVID and Late summer\Fall of 2021, but going by written communications I sent out at the time, We Are Body Politic was a huge support to me, so glad to see their and similar organizations work recognized.

https://www.wearebodypolitic.com

Today I’m at the European Association of Urology congress #eau23 reminding clinicians to signpost patients to peer-support groups. Many other people have gone through similar treatment, and are are now living full and happy lives.
#patientadvocacy

RT @yen_godden@twitter.com

Need help: Anyone know of a good UK #Disability #PatientAdvocacy group/org? I need someone assigned to me/case worker as I don’t have the energy to explain everything to a new person each time I contact. #DisabilityTwitter #DisabilityUK #PatientAdvocateUK

🐦🔗: https://twitter.com/yen_godden/status/1614543955907203073

New post from Cherise Shockley about coverage for GLP-1 medications. Do you have advice? Comments are open.

https://sixuntilme.com/.../09/pbm-blues-by-cherise-shockley/

"If you’ve had this issue with your PBM and were successful in overturning the denial, I’d like to know what steps you took. I refuse to let this go."

#diabetes #patientadvocacy

RT @RareRevolutionM@twitter.com

Is your #RareDisease awareness day soon? Book your patient group for our #TuesdayTakeover in 2023!

Please email rpender@rarerevolutionmagazine.com for more information

#PatientAdvocacy #Genetics #PatientStory #Charity #Health #PatientGroup

🐦🔗: https://twitter.com/RareRevolutionM/status/1609927866564722688

Twitter handle @brownbeansprout is here-Not sure about all this. Just going to dip my toes and see how it goes. Interested in #lcsm #oncology #patientadvocacy #caregiving #cancer #consulting

Attended an amazing meeting of pancreatic cancer experts yesterday. Made me think a lot about patient advocacy and the ways I might be able to contribute. I've been so without purpose lately that I kind of feel found. #pancreaticcancer #patientadvocacy

What happens to the millions of patients who use #Twitter to connect if the platform folds? #digitalhealth #patientadvocacy
https://medika.life/twitters-decision-to-stand-down-on-covid-misinformation-highlights-a-new-symptom-trust-deregulation/

#GivingTuesday is a big kick off for many #nonprofits and #patientadvocacy orgs like ours. Help support our work to improve the QoL for children and families impacted by #neonatal & #pediatric-acquired #HIE.
Hopeforhie.org/donate

ATTN: not written for pity, but for #awareness with real life examples

Week 6 of fighting with medical insurance and specialty pharmacy:
- missed 3 sessions of a biologic
injection a rare #autoimmune disease
- been on this treatment regiment for 2 years,
now with this extensive lapse I’ll have to
restart the regimen from scratch
- finally through the “withdrawal” stage but
now symptoms resurfacing at an alarming
rate (I’ve gained almost 20 lbs of fluid)
- there’s nothing more the doctors,
my insurance company, nor I can do…
it’s all in the hands of the specialty
#pharmacy who are still dragging their feet

While I’m just one of many patients who’ve experienced this type mistreatment, big specialty pharmacies and #medical insurance companies need to realize the FULL impact to their patients. I realize and am thankful that my case isn’t as severe as so many others, but I hope sharing this can help speak for them as well.

Because of lapse in treatment, patients lose:

PROGRESS:
All of the positive momentum they’ve gained by using their regimine. Possibly years of progress are now gone, forcing patients to restart their treatment plan from the very beginning.

MONEY:
In my case, the injections are supposed to be continuously spaced out as the body gets used to the treatment. Going from one treatment every few months back to every few weeks means more medication needed => more money spent by the patient.

TIME:
Untreated conditions can lead to debilitating symptoms often keeping patients from being able to go to holiday gatherings or even function in society. Personally, I had to reject some offers to see friends and family because the fluid pressure on my body made it impossible for me to walk or stand for too long.

WORK/LIFE OPPORTUNITIES:
2 years into my treatment I was finally feeling more independent and able to plan my life more than 24 hours at a time. Because of my relapse, I’ve canceled planned events such as leadership conferences, family trips, etc. I’m very lucky to have a flexible work schedule and wonderfully supportive team, however for others they may lose work days do to their disabling flair up of symptoms.

HOPE:
For those with chronic conditions, we lose hope in the medical system which adds to our medical trauma. We feel even more helpless than we already do in society as we’re completely dependent on the system to maintain our health and lives. Even reaching out early to the specialty pharmacy and insurance in order to best avoid delays may still result in lapse in treatment. We can’t help move it along and we didn’t do anything wrong to deserve this.
—————————————————————
#chronicillness #PatientAdvocacy #advocacy #EducationIsAdvocation #HealthCareSystem #HeathCare #fediverse

RT @RareRevolutionM@twitter.com

November 22nd is Emanuel Syndrome Awareness Day! Help us spread the word by liking and sharing our posts! Our slogan is, wear purple and blue on 11/22! #esawareness #esawarenessday #emanuelsyndrome #raredisorder #genetics #rarechromosomedisorder #patientadvocacy @C22Central@twitter.com

🐦🔗: https://twitter.com/RareRevolutionM/status/1595024675398381568

More and more patients are writing about their experience of living with illness. We have the possibility to know much more about patient’s inner lives, what it means to live with illness, and how patients manage their bodies and emotions than we have ever done before.

But how many of these accounts are read by doctors? Are they part of their curriculum?

I’m asking because I’m curious…

#chronicillness #patientadvocacy #medicalmastadon #medicaleducation #mecfs #LongCovid #fibromyalgia

Cross-post from birdsite: in France, 11.8 million patients cannot access a gynecologist. Study done by the highly-respected UFC Que Choisir, a national not-for-profit consumer representative union.
(Image alt text, FR: “11,8 millions de patientes n’ont pas accès à un gynécologue.”
EN: “11.8 million patients do not have access to a gynecologist.”)
#gynecology #obgyn #medicalaccess #patientadvocacy

https://twitter.com/ufcquechoisir/status/1592879661406556160?s=12&t=kod6XfvWdt4fah5Yg7bjDw

Morning from US West Coast. I work in Product for a #mentalhealth #startup.

Best mastodon tips: follow hashtags like #newhere and say hello esp to new folks, learn and use CWs, download different mastodon apps (currently using Tootle iOS), engage on posts, follow hashtags on your interests, update your profile with your interests, post about yourself.

Likes: #Coffee #travel #reading #yoga #food #gardening #arts #nature #patientadvocacy #mentalheath #followbackfriday

Continuing…

#patientadvocacy
#rarediseases
#spinaloncology
#spinalsurgery #sarcoma
#illness #chronicdiseases
#co-production #smartpatients #LeadPatient #notaboutmewithoutme
#neuroanatomy #medicalhistorian
#med-mastodon
#artistpublishing
#writing
#forests #trees #plants
#henriRousseau
#folklore
#FBIfiles
#ghosts #conjuring

Hmm, sitting here a few days and I guess I should do a #TwitterMigration #Introduction

I’m Gnome. I have lots of interests. Live music is a big one. I also garden in summer, sew/craft in winter. Although, I’m in the middle of a DIY home remodel, so neither of those happens.

But, my Twitter persona was #cancer #PatientAdvocacy. With an interest in #InvisibleDisabilityAwareness

RT @nicolala2017
Last minute prep on the bus ahead of meeting with pharmacy students at the Rotunda shortly. Say the words 'ginger biscuits' to someone with HG at your own peril! @HyperemesisIE #patientadvocacy #hyperemesis